Taking matters into my own hands
I will turn 40 this year and I have suffered from migraines since age 15. At 15, the doctors told me it was hormone related. I was given triptans to take when I had one. Then they continued, and I missed work, and just dealt with it. After my two pregnancies and a hysterectomy at 26, I was still dealing. I drove two hours to a neuro specilizing in migraines. I started on Topomax, elavil, and pain meds and nausea medication. I have had multiple hospitalization where I endured DHA by IV. Finally I went to a new neuro who treated me after my last hospitalization. Now up till now I had endured every kind of treatment I think the docs could think of to the point of being basically sedated with stadol on more than one occasion. Well the new doc told me the topomax was no longer working. I recieved a nerve block in two places in the back of my head. I also was put on Depakote and Lipitor. Yeah it is a blood pressure medicine supposedly it has been shown to help with migraines too. Well after a month, I was so tired could barely make it through work. I had trouble with walking down stairs and experienced periods of vertigo. I went to doc and my Blood pressure was extremely low so I was taken off the Lipitor. Another month went by and I still had migraines and was gaining weight. I went back to the doc and told him the Depakote was not working and I had gained thirty pounds. I stopped the Depakote. Now I am taking my maxalt when I get one and doing the dark room and cold face mask. I have gotten tired of trying meds and waiting to see if they work or not. My job does not understand and I am still continually missing work. I am waiting on a cure and I open to anyone's own experience in this grueling disease.
You've been through so much! I'm sorry to hear you're in a tough place right now.
If you're looking for new medications to try, this list from the American Academy of Neurology is really helpful: https://migraine.com/blog/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/. Researchers reviewed evidence on many different migraine preventives and ranked them according to efficacy.
For stories from other people with migraine, take a look at https://migraine.com/stories/. Those are stories from Migraine.com readers. You can also keep an eye on the blog (https://migraine.com/blog/), where patient advocates share their stories interspersed with news and information about migraine.
I wish you the best of luck in finding relief.
Kerrie
Thanks so much Kerrie. My doctor and I are keeping our eye are new medications that are supposed to be coming out in the next year or so just waiting FDA approval my doctor said and he wants me to give it a try. I mean it can't hurt. I submitted over a year ago for disability and was denied the first time and then had to appeal and that was denied and now I am waiting to get a hearing date in front of a judge but they haven't set a date yet believ it or not they said it could take up to twenty one months just to set up a date that doesn't mean the hearing could be then just the date would be set be then the hearing could be two years or more from then which is crazy but my lawyer said the only consolation is that however long they string it out is that when you win your case they have to go back and pay you from the date you first filed so if it is three years from now then they backpay you from then and still pay you from then on band of course my lawyer doesn't get paid unless I win so my lawyer thinks my case is pretty solid with all the medical documentation it's just that social security doesn't have anyone qualifies to go thru it all and basically make that decision if your case isn't a clear cut case or doesn't fit into one of their diagnosis. Which is very sad because there are a lot of other people that deal with this besides me and not just migraines but other types of invisible illnesses that don't "fit" into government categories. I appreciate the information and will definitely read through the blogs and other articles. Thanks again.
Sorry to hear about your troubles, SuzyQ. I'm in the same boat only I've already been through and denied my disability from SS. I've filed again & am waiting for a hearing too. I've tried lots of medications too & mine just keep getting worse. I hope you have better luck than me.
This whole subject just sucks for alll of us! I have a great PCP who told me that she doesn't have much experience treating Migraines when I first saw her 3 years ago. She's been trying pretty hard, I think. But lately it just feels like she's given up. It's obvious she's afraid to prescribe opioids and whatever because there is so much trouble with addiction, medication abuse, blah blah blah. I DO NOT CARE ABOUT ANY OF THOSE THINGS ANY MORE!!! What I care about is RELIEF!!! I know that my chronic daily Migraine is NOT MOH, is a PROGRESSIVE DISEASE that has no cure, I'm not looking for a cure or a magic pill. I no longer remember what it's like to wake up in the morning feeling good, no pain of any kind, no sickness or anything; just ready to sieze the day! I can't imagine what that feels like any more! I have reached the point of desperation and now my husband has too. He's so angry about all of the jerk so-called physicians out there who really don't care about their patients enough to rreally go the extra mile or support them through this hellish nightmare! I know what it takes for a few minutes of a pain level to go from a 10 to a 7, which is soooo nice after years of living above a 7. I live wiht my head and neck wrapped in ice packs but that only goes so far and I'm so tired of being so cold! I am now unable to do anything. I am in so much pain that I can't concentrate well enough to work so I'm disabled. I don't mind being 'disabled' but I do mind, very much, having the joy, freedom, confidence, self esteem, rest, peace of mind, riding my bicycle, playing tennis, being out doors in the sun, going to my kids' school events, shopping in the weather at Christmas, building snowmen, going to theme parks with my kids, traveling, ability to help others and countless other things this pain has robbed me of for so long. This is desperation. This is where a patient decides if they're 'going to take things into their own hands'. But what does that actually mean? Street drugs? Alcohol? Suicide? Take someone else's meds that they were given after a procedure but no longer need? I'm not rich so I can't travel all over the country trying on specialists to find the right fit. Plus, I have kids, so I can't just leave them behind in a possibly empty quest. How do I 'take things into my own hands'? How do I take care of me now? There aren't any specialists in my city...well not valid ones anyway. I've seen some...no help at all. I'm starting to have PTSD when it comes to even thinking about going to a new specialist-what-ever. I don't know what to do and I'm about to be out of hope.
I totally understand your plight. There are so many of 'us'. It's like we're a separate, unknown species or something. I don't know anymorek, I just don't know..
